Most of you in the Knoxville community recognize this sweet little face. I had the pleasure of meeting her recently, and she is a complete joy to be around (can’t you tell?). Meris’ parents, Qwynn and Brandon White, received news a few months ago that Meris has Alexander’s Disease – a type of Leukodystrophy that, simply put, results in the degeneration of the nervous system. Like most Leukodystrophies, there’s currently no cure for AxD (but hopeful that clinical trials for treatment are in the near future!) Knowledge is power, so I encourage you to do some research on Leukodystrophies. https://huntershope.org/ is a great place to learn more and the best place to donate for research.
Christin and Kyle Webb, also a Knoxville family I’ve known a while, were introduced to Krabbe Disease in 2014 when their daughter, Mabry Kate, was diagnosed. Krabbe is one of the few Leukodystrophies that currently has the possibility for treatment (still very new!), but unfortunately, treatment is only possible if the child is diagnosed pre symptomatic, and most states don’t screen for these diseases at birth, resulting in terminal cases. The Webb’s relentless efforts over the past few years have resulted in The Mabry Kate Webb Act to be passed and implemented in the state of Tennessee in 2017, requiring all newborns to be screened at birth for Krabbe (and 4 other lysosomal storage disorders). Through this Act and the life of Mabry Kate, children have already been saved, one of which being Mabry’s brother Owen.
The Painting Vitality Project
I’m not a parent myself, but something really struck a chord after these two families close to home were affected by a Leukodystrophy. In hopes to raise awareness and to give these families something to treasure, I’ve recently started The Painting Vitality Project – an ongoing effort where I paint conceptual portraits of children who have been given life threatening diagnoses. These non-traditional portraits are gifted to the parents, portraying their child as they see them… with lots of vitality Three different portraits are in the works right now for families in East TN, and I’m looking forward to delivering Meris’ portrait to the Whites in the next few weeks! And then sharing the image with you guys on social media Special thanks to Christin Webb for getting me in touch with families I would’ve otherwise had trouble finding!